It is the most common hormonal disease in women of childbearing age: polycystic ovary syndrome, or PCOS. It would affect 10 to 15% of women, and can have a strong impact on their daily life, even thwart their family project. PCOS is thus one of the leading causes of female fertility disorders.
A condition whose causes remain unknown to this day, but which manifests itself through a set of symptoms. And if “no preventive or curative treatment exists,” Inserm indicates, therapeutic care is offered to patients to reduce symptoms and restore fertility.
Patients often wandering diagnosed
When we say “PCOS”, many make the eyes round like saucers. A lack of information that first affects those first concerned, who can go through a long diagnostic wandering. “I hardly had my period anymore, I knew something was wrong,” recalls Solène. I found out that I was suffering from PCOS after a year and a half of wandering ”. Before being diagnosed, “it was a long journey, remembers Morgane. When I was 16, I didn’t have my period for seven months. When I consulted, I was told: “You are young, it is normal not to have regular cycles”. I was prescribed the pill, which delayed the diagnosis ”.
This syndrome, which affects between one in seven women and one in ten women of childbearing age, Hélène had never heard of it until her diagnosis “this year, after a miscarriage. I felt alone, helpless. How can this pathology which affects so many women be so unrecognized? “Asks the young woman, who has found support” from the Esp’OPK association “.
“There’s been a lot of talk about endometriosis in recent years, but for PCOS there is almost nothing. Many do not know what this invisible disease is and think that it is being added. I had to consult four gynecologists before the diagnosis was made in 2019 ”, laments Priscillia Desbiolles, illustrator. The young woman, who was then facing fertility problems, struggled to find answers to her questions. It was there that she decided to write the book she would have liked to find in bookstores. She signs today PCOS and infertility, what if we talked about it? *, a self-published work in which she tells her story.
Symptoms suggestive, including infertility
However, PCOS is accompanied by suggestive symptoms. “The diagnosis is made when at least three are observed. There is spaniomenorrhea, when the periods are very far apart, or even absent, which means that ovulation is disturbed or even prevented, explains Dr Odile Bagot, gynecologist, author of the Mam Gyneco blog and the book Endocrine disruptors: war is declared! (ed. Mango). There are also clinical signs of hyperandrogenism (an increase in the level of male sex hormones): acne, hirsutism, alopecia. And biological signs, which can be identified by blood test ”. One can in particular “look for certain hormones, in particular AMH (the anti-Müllerian hormone) which, at high levels, is a sign of severe PCOS”, adds Priscillia Desbiolles.
“Another sign, which gives its name to the syndrome, is to have at least twenty microcysts per ovary”, adds Dr. Bagot. More precisely, it is when “the ovaries have a very large number of ovarian follicles,” explains Priscillia Desbiolles, who has compiled the scientific literature on PCOS. Normally, a follicle begins to grow at the start of each menstrual cycle and matures on day 14 of the cycle: this is ovulation. In PCOS with ovulation disorder, no follicle starts to grow ”.
This is how many women find out about their PCOS when they are having difficulty conceiving a child. “I had no symptoms, it was after two years of unsuccessful attempts to have a baby naturally and a change of gynecologist that I was prescribed a check-up and the diagnosis was made”, confides Stella. “When a woman who has been trying to have a baby for more than a year does not get pregnant, we will look for the cause, which explains why the diagnosis is often made on this occasion,” confirms Dr Bagot. “If PCOS can alter fertility, fortunately, it is not irreversible,” reassures Priscillia Desbiolles, now the mother of a 14-month-old baby boy.
Symptomatic treatments and lifestyle measures to reduce the effects of the disease
Above all, “we must distinguish between the different forms of PCOS, there are some more severe than others,” says Dr. Bagot. If necessary, treatments are prescribed to trigger ovulation ”. Anaïs, 26, was therefore prescribed ovarian stimulation, “with daily punctures in the thigh, and the first attempt was a good one!” », Rejoices the young mother of a little girl of two months. Sometimes you have to go through a longer ART course. Like Elodie, 33 years old: “ovarian stimulation, surgical treatment, IVF: nothing worked”. She then gained “a lot of weight because of the syndrome and hormonal treatments”. “In the most severe forms, a metabolic syndrome can be associated: it manifests itself by obesity, hypertension, type 2 diabetes or even cholesterol,” explains Dr. Bagot. Weight loss can then restore fertility ”. After having “had recourse to a sleeve and lost 65 kg, I learned my first natural pregnancy, followed by a second two years later”, says Elodie, who will have “waited seven years to become a mother”.
Lifestyle measures thus make it possible to attenuate the effects of the disease. Laurianne, whose PCOS caused her “insulin resistance”, “changed [son] diet by adopting a “diet” designed for people with diabetes. The pounds started to disappear and my symptoms eased, which allowed me to get pregnant naturally and to feel better in my body and in my head ”. In the event of “PCOS with insulin resistance, it is recommended to ban fast sugars,” says Dr Bagot.
When there is no pregnancy plan in progress, “we offer patients progestogen treatments, which will block androgens, to put PCOS to sleep and resolve skin problems,” explains Dr. Bagot. “This treatment resolved my acne and reduced my symptoms,” confirms Mathilde. Nawal, she “could not stand this treatment”, which made her “gain weight and gave black thoughts”, and which would be associated with cases of meningiomas. “More and more patients no longer want the pill,” observes Dr. Bagot. In this case, we can recommend taking a dietary supplement, myo-inositol, sometimes called vitamin B7, which promotes insulin regulation and can improve polycystic ovaries in a more natural way ”.